Last Week at the Lab

Last week. The lab.

The docs at UCSF who I don't plan to see again ordered a sputum test. Dr. Wendy reminded me that she's also ordered one months ago when this all began. I hadn't done it because we thought the bronchoscopy washings would be a better test of the same thing. Four weeks later the washing didn't tell us much but I never went back to the sputum test. So, after my 3 week birthday break, I focused to complete this test.

It involved tickling my lungs until I coughed up some phlegm from the deeper places and then spitting it into a sterile cup. Three cups, three days in a row, then drive it to the lab before the weekend would make it too old to use.

The lab is in a set of professional buildings that cluster around the Petaluma hospital and they all look alike. I'd been there several times, so I'd self-confidently & unthinkingly left the address at home. I couldn't find it. I wandered around for awhile and finally borrowed a phone book from the volunteers at the hospital reception desk, got the address and, eventually, there it was.

Dr. Peterson, who I am seeing again, ordered a blood test for a Galactomannan level*, so I asked if I could do that too. The only staff person who was in the lab had never heard of the test. He consulted his procedure books between phone calls and whatever else he was doing. Eventually, he called someone in another office and asked him. That person said he'd research it and call back. Did I want to wait?

It was a beautiful warm day, I was coasting on sweet birthday wishes, and I had a good book. I said I'd wait. Eventually, the lab guy found out that I'd need to get a special kit from the doctor in Berkeley. Listening, standing at the counter, I saw my sterile sputum cups sitting behind the desk rather than being in the refrigerator. When I pointed this out, the guy lazily assured me they were fine there, that he'd put it away in a minute. That was the end of my lazy warm birthday kind of a day.

It was not fine with me,
--waiting was not fine,
--not knowing that I needed a kit was not fine,
-- forgetting that I needed this test for three weeks was not fine,
--relying on someone I didn't know to take care of my test samples was not fine.
None of it was fine with me!

"I've gone to a lot of trouble to do this test and I'd like that to be in a refrigerator," I said.

He got up and put the samples in the back -- probably in the refrigerator, but who knows? The guy in the other office was going to FAX something more about the test kit. After ten minutes with no FAX, I left.

I left, ready to take charge of my life with Fred again, ready to make lists, plan ahead, make multiple commitments, stay on top of it, push for what I want and get though tasks efficiently.

I need this warm lazy birthday pleasure now and then and I love the people who gathered around me to give me such a memorable experience of it. I need to keep that available and visit it regularly. I would be an idiot to forget it in a trance of productivity.

I've never known anything like it in quality and quantity. It's like we built an island I can visit by simply turning around and taking a step to one side. It's a solid place that I've spent my life looking for through a veil of mist and fog. I've had magical moments when the mist cleared, I found a boat and, for a few hours or (once or twice) for a few days, I was able to visit. But I've never known how to recognize it from afar, where the boat is stowed and how easy it is to sail there.

As I walked through the sunshine to my car, the call of Fred and other projects were part of the warmth and pleasure of the day. I turned the key in my car and it blinked about an empty gas tank. I expect my sixties to be a decade with some physical and emotional energy. I want to spend it in service to myself and the world. It's time to refocus and take up the sprint.

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*Detection of galactomannan in blood is used to diagnose invasive aspergillosis infections in humans. This is performed with monoclonal antibodies in a double-sandwich ELISA assay from Bio-Rad Laboratories was approved by the FDA in 2003 and is of moderate accuracy.

Medical Questions & Non-Answers This Week

Dr. Wendy talked to me last night on the phone and we went over the questions and tests. Dr. Dilisio was supposed to call yesterday but he didn't. He called today. His answers are in italics.

• Aspergillosis— is it now ruled out due to both bronchoscope cultures and blood test? Or, does it take longer to grow?

It’s not likely but it’s not ruled out. Diagnosis comes from many markers.

• CEA blood test: Carcinoembryonic Antigen —normal for non-smoker: “3” Mine: “10” Very sick with colon cancer patient: “800”
  

This may be something but it’s not high enough to tell us much. It’s neither here nor there.

• IGE test. Slightly positive What does this mean?
  

Allergy – mild. But he couldn’t find the results. He was speaking very hastily.

• Other blood test results all negative: that’s good, right?
  

We didn’t get to this question. He was very rushed.

• Bronchoscope cultures showed candida. Could that be from the esophagus as the instruments came through on their way out? I know I had candida there. I took two diflucan pills, a week apart. Is that likely to have taken care of it, if it is in middle lobe?
  

He was too rushed to hear this, but started our five minutes by saying candida does not figure into the problem as he sees it.

• When is the best time to repeat the CT scan? I want to repeat it when there is a chance to see some positive changes if this whole mess is due to inflammation or fungis.

October 2009

• What kind of drug routine would I have pre and post surgery?
  

We never got to this question.

Aspergillosis

The pulmonary specialist thought Fred might be aspergillosis

He ordered a blood test. I'm at risk because I have asthma. The fevers could be a symptom of aspergillosis. The Bronchoscopy washings were negative for aspergillosis and so was a follow up blood test.

Aspergillosis is a group of illnesses caused by mold. The mold that triggers the illnesses, aspergillus, includes more than 150 types of mold that occur widely in the indoor and outdoor environment. Although most of the molds are harmless, a few can cause serious illnesses in people with a weakened immune system, underlying lung disease or asthma. These illnesses, collectively called aspergillosis, range from allergic responses to severe and sometimes fatal infections.

Aspergillosis begins when susceptible people inhale mold spores into their lungs. In some people, the spores trigger an allergic reaction. Other people develop mild to serious lung infections. The most serious form of aspergillosis — invasive aspergillosis — occurs when the infection spreads to blood vessels and beyond, into the lungs to other organs.

The name of the fungus, Aspergillosis, was coined by a priest botanist, for its resemblance to the aspergillum, a brush used for sprinkling holy water in the Catholic high masses. Over 135 species have been described. A couple dozen are involved in human and animal disease.

Depending on the type of aspergillosis, treatment may involve watchful waiting, antifungal medications, steriods or, in rare cases, surgery.

Diagnosing aspergillosis can be difficult. Aspergillus is common in the environment and is sometimes found in the saliva and sputum of healthy people. What's more, it's hard to distinguish aspergillus from other molds under the microscope, and symptoms of the infection are similar to other conditions.

To arrive at an accurate diagnosis, your doctor is likely to use one or more of the following tests:

• Imaging tests. A chest X-ray or computerized tomography (CT) scan — a type of X-ray that produces more detailed images than conventional X-rays do — can usually reveal an aspergilloma as well as characteristic signs of invasive and allergic aspergillosis.
• Sputum stain and culture. In this test, a sample of your sputum is stained with a dye and checked for the presence of aspergillus filaments. The specimen is then placed in something that encourages the mold to grow.
• Tissue and blood tests. Diagnosing allergic bronchopulmonary aspergillosis usually requires skin and blood tests. For the skin test, a small amount of aspergillus antigen is injected into your forearm. If you have antibodies to the mold in your bloodstream, you'll develop a hard, red bump at the injection site. Blood tests look for high levels of certain antibodies, indicating an allergic response.
• Biopsy. Examining a sample of tissue from your lungs or sinuses under a microscope is usually necessary to confirm a diagnosis of invasive aspergillosis.

I've had all these tests except Sputum, none of them positive for the fungi, but that's still not conclusive that I don't have it. It might not be aspergillosis -- it might be cancer. Or... something else?